October 2011

Dispatcher's Notes

Dear Friends,

As PHA's new International Services Manager, I am excited to bring you the second issue of the PH International Quarterly Newsletter! This quarterly newsletter was created to keep you informed of developments among PH associations worldwide and help spread tips and advice from global members of the PH community. It connects you to links and resources, offers snapshots into recent news, and aims to keep PH association leaders in close contact. Please share this newsletter with medical professionals and patients in your country as you see fit.

We welcome your feedback and stories to help us make the PH International Quarterly a valuable resource. If you would like to submit a story for the next issue or are looking for more information on any of these stories, email International@PHAssociation.org. The global PH community grows stronger as we learn from each other.

Dr. Tag el-Din, Head of the Egyptian Association of Pulmonary Diseases, recently led a conference in Cairo about the rise in PH diagnosis due to increased awareness of the disease. He stressed the need for continuing awareness initiatives in the patient community and among young medical professionals.» Read the article in the Egyptian Gazette

PHA Classroom was created as an online educational tool for PH patients and caregivers. PHA Classroom now has over ;120 recordings and offers live presentations. Recently, PHA created Salón de Clases de PHA, which offers four educational recordings for the Spanish speaking community. » Visit Salón de Clases de PHA

PHA South Africa was founded by Sharon Chetty, a PH patient who was hoping to meet other patients in her community. After Sharon passed away, her sister Indirani worked hard to keep the group together. In the last few years, PHA South Africa has experienced significant growth in group membership, leadership, and organizational activities.

In the last year, the organization successfully held the first conference for PH patients in South Africa. Following that success, they applied to PHA's International Seed Grant Program to continue their outreach efforts. They were recently awarded $10,000USD from the International Seed Grant Review Committee to create marketing materials and awareness campaigns in South Africa. Their first event is an educational day for medical professionals and will be held on November 12, 2011. » Read about their first patient conference

ANHP, recipients of a 2011 Tom Lantos Innovation in Community Service Award, hosted a one day conference for psychologists and psychiatrists in Madrid on the psychological care of PH patients. Irene Delgado, President of ANHP, explained ANHP's reasoning behind the meeting: "PH patients must get emotional support to face the fear of our prognosis, and we must have the tools to reduce the challenges of this disease, which often impede access to jobs and make it hard to adjust to society. Psychological support is paramount for many patients in their struggle to make the most of their lives."

The full story of ANHP's meeting is availabe in the Fall 2011 issue of Pathlight

PHA Europe Annual General MeetingPHA Europe held its General Annual Meeting in Castelldefels (Barcelona), Spain from September 8-11, 2011. The meeting brought together 46 patient leaders and representatives from 22 countries. One of the sessions was devoted to sharing and discussing the problems encountered at national level by PH patients with respect to access to treatments and surgery options, highlighting the need for more effective advocacy and lobbying to improve conditions for patients across Europe.

Other topics included: how to reach out to new countries to extend PHA Europe membership, tackling the challenges involved in managing a patient group, making better use of the new social media, new ideas for fundraising for PH, using patient stories as communication tools, building online communities.»Read more about PHA Europe's Annual General Meeting

Update by Pisana Ferrari, Vice President of PHA Europe

What Has Your Group Been Up To?

PH Awareness

The fall season is an important time for PH awareness worldwide. Many global PH associations are creating awareness campaigns, some of which include online awarenes of PH, educational events for the PH community, and visits to national governments.

PHA: This November, PHA is celebrating everyday heroes with the theme "The Power of One." We have planned some exciting events for November, including a PH Online Awareness Day on November 1 and a webinar, "Improving Patient Outcomes and Early Diagnosis: An Examination of the Reveal Registry," which is open to all. PHA’s annual luncheon with Congress is also coming up along with hundreds of fundraisers and awareness raisers from galas to bake sales. »Read about PHA's Awareness Month

PHA Canada: PHA Canada has begun a "BLUES" campaign, which stands for Bluish hands, feet and lips; Lightheadedness; Unable to breathe; Edema; and Syncope. The campaign will start in four cities in Canada and end with a visit to Parliament Hill, Ontario. »Read about PHA Canada's Awareness Initiatives

PHA Europe: PHA Europe launched their "Time Matters" campaign in an effort to increase global awareness of the disease. This campaign hopes to increase awareness and reduce the delay in PH diagnosis for many patients. When asked about the campaign, Pisana Ferrari said, "PH patients and caregivers across Europe (and hopefully the rest of the world) will be able to post their photos, hopes and dreams for the future, thus contributing to raising awareness on the disease." »Read about PHA Europe's Time Matters Campaign

Sociedad de Latina de PH (SLHP): SLHP will be celebrating the first ever "Latin Day of PH" on November 28, 2011. They will be hosting a day of awareness and education for the Spanish speaking PH community in Florida.

PHA South Africa: PHA South Africa is hosting an educational event for medical professionals on November 12, 2011 (see story above).

Connect with PHA

Links

» Research Roundup: a new benefit for members of PH Clinicians and Researchers and PH Professional Network (formerly PH Resource Network)

The information provided on the PHA website is provided for general information only. It is not intended as legal, medical or other professional advice, and should not be relied upon as a substitute for consultations with qualified professionals who are familiar with your individual needs.